Positive neuro news on Boo

Discussion in 'The Watercooler' started by slsh, May 25, 2011.

  1. slsh

    slsh member since 1999

    I didn't realize how utterly stressed I had been over his last seizure until after the appointment today - sat in the van crying tears of relief (with- Boo laughing behind me - he's always thought I'm just a riot when I cry - rotten kid! ;)).

    Neuro's philosophy is seizures beget seizures, so he thinks there's a decent likelihood that the first seizure (caused by husband forgetting to give him medications, which will *never* happen again) lowered his threshold enough to allow the second monster seizure to happy 10 days later. I was hoping for this answer, though I didn't know if it was possible. One of his medications was upped at that point and we've been (knock wood) almost a month seizure free now. So this is good.

    Jury had been out on this neuro until today. Boo's been stable since right before we had to leave our beloved pediatrician neuro, so this new guy had just been for medication refills. He earned my total trust today. Spent time talking with- me about SUDEP, which no one had ever mentioned to us. Explained the wicked thin line in treating a status seizure - medicating to get the seizure to stop but not to the point of requiring intubation. Explained 30% mortality with- intubation (glad I didn't know that 10 years ago when they had to intubate Boo) but the flip side is if they don't get seizure to stop, it can cause more brain injury (which I knew), heart arrhythmias, etc. He also reinforced that, yes, a lot of ER docs are not going to catch him seizing if he's not having classic convulsions because they are going to assume, based on his diagnosis, that he's near-comatose anyway. Fact of life. He suggested a brief note to go with- Boo in ambulance describing baseline state since sometimes they won't let me back in ER until they think he's stable (which last time was actually nonconvulsive seizing). We are thinking on the same wavelength - I was thinking a T-shirt or blanket with red letters on it just saying that baseline state is alert and responsive, and if he's not responsive and has rhythmic nystagmus, he's still seizing.

    Neuro was not condescending in the slightest and took my ridiculously control-freak Type-A micromanagement in stride (actually, he called me an eagle, LOL). Even asked me to proofread the scripts before he signed them. ;)

    I'm just so utterly relieved. I mean, I know he could get hit again, anytime, anywhere, and chances are probably really good that he will have another seizure again someday, but it's just so nice to, for once, have a likely cause that is preventable.
  2. tiredmommy

    tiredmommy Site Moderator

  3. Hound dog

    Hound dog Nana's are Beautiful


    I'm serious.............when I finally found neuros with Travis I could trust, both pediatrician and as an adult, I wanted to kiss their feet. Good ones that take time to listen, explain, reinforce, ect can be hard to find. So glad to know Boo has another winner on his team!

    And so happy he's been stable again for a month.

  4. KTMom91

    KTMom91 Well-Known Member

  5. Lothlorien

    Lothlorien Active Member Staff Member

    What a relief that must be for you. Glad you have a good neuro that you are comfortable with.
  6. DDD

    DDD Well-Known Member

    Phew/Whew! Hugs DDD
  7. susiestar

    susiestar Roll With It

    Wonderful news. I am glad that what you were hoping for is the reality - that is a true blessing. Isn't it amazing how sensitive our bodies can be, so that one missed dose of a medication can have such a drastic impact for such a long time? the human body is an incredible thing!

    Finding a good neuro is a gift. I wish we could. At first we thought we had, he was even written up as one of the top ten docs in the state - not pediatrician docs, not specialists, top ten of ALL docs in the state. And the kids loved him. but he got tired of kids that were not constantly having problems that were dramatic.

    The blanket or tshirt sounds like a wonderful thing. Use a sharpie to write on fabric, and you can embroider over it if you want. There needs to be SOMETHING if the ER won't let you be there and he cannot tell them. Sadly, chances are that they won't believe you anyway. But you will have at least tried.
  8. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Fantastic news!!
  9. AnnieO

    AnnieO Shooting from the Hip

    This is WONDERFUL!!!

    I love him having you proofread the scripts. THAT, right there, says a LOT.

    And as for Boo? I'm glad he's doing as well as he is! And I bet husband will never forget again...
  10. JJJ

    JJJ Active Member

    Glad Boo is doing better!
  11. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Oh I aam so pleased for you. Great docs are so rare.
  12. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Great News for you and Boo.

    Everytime I had to call an ambulance for so, I would hand out laminated cards to the ambulance drivers and Fire Department as they came in the door. It had his medications and instructions NOT to tube him without giving him a shot of magnesium first as it is most likely NOT an asthma attack but his throat muscles spasiming and shutting down.

    I HATE that they won't let you back sometimes in the ER till they get a patient under control.

  13. Star*

    Star* call 911........call 911

    I'm happy for Boo AND Boo's Mother.......this has to make YOU feel about 100 lbs lighter. Good deal kiddo ------- How's DF handing the news?
  14. busywend

    busywend Well-Known Member Staff Member

    What a relief! I am happy that you found a doctor you trust!